Appeal application against NICE decision accepted

Steve Allen, Tackle Patient Representative, reports that the combined application for appeal against the NICE decision on Abiraterone made by Tackle and Prostate Cancer UK has been successful.

A submission made by Prof Nick James, a nominated clinical expert, has also been accepted.

This is merely a first step in a long process. It does in no way mean the original decision will be revoked but at least it is progress.

NICE rejects use of Abiraterone for men with newly-diagnosed metastatic prostate cancer

Tackle is extremely disappointed to report the latest decision by the National Institute for Health and Care Excellence (NICE) to reject the use of Abiraterone for men with newly-diagnosed metastatic prostate cancer in England and Wales.

Current first-line treatment for men with newly-diagnosed metastatic hormone sensitive prostate cancer (ndmhsPCa) is hormone therapy with additional chemotherapy (Docetaxel).  However there are many men who are unable to tolerate Docetaxel and, for them, there is a great unmet clinical need.  Abiraterone would have met that unmet need but this latest decision by NICE effectively prevents its use within the NHS.  For these men there is no choice: it is still hormone therapy only.

NICE do not deny that Abiraterone is at least as effective as Docetaxel when used in men with ndmhsPCa.  Their decision would appear to be have been made purely on the grounds of cost effectiveness and not on clinical effectiveness. 

This decision is directly in opposition to that made by the Scottish Medicines Commission earlier.  There is therefore now a disparity in availability of treatment depending on where in the UK the patient lives.

Tackle are already working in close collaboration with Prostate Cancer UK to lodge an appeal against this decision.  Read our Summary of the NICE decision and our Comments on it

if you are a patient who feels their treatment could be affected by this decision, then please do contact us via our patient representative: 

Please note that this latest decision will not affect men who have already commenced therapy with Abiraterone instead of Docetaxel as a result of the Covid crisis.

STOP PRESS: We have started the Appeal Process - read more here.

Restarting Cancer Services in the NHS after COVID-19

COVID-19 is an unprecedented crisis which has had a profound impact on health and care services across the UK and will continue to have an impact for the months and years to come.

To guide the restoration of services, Tackle Prostate Cancer along with 24 other cancer charities have come together - as One Cancer Voice - to develop a ‘12-point plan’, supported by available data and intelligence, for what we believe the health service in England will need to do to enable cancer services to recover from the pandemic.

The plan sets out how we can deliver the cancer screening, tests and treatment that patients need.

Read the plan in detail here.

European Experts Back Prostate Cancer Screening

Tackle are at the forefront of the campaign for a targeted national screening programme for prostate cancer.

Prostate cancer  is now the most commonly diagnosed cancer in UK and the annual toll of deaths from prostate cancer continues to rise, now topping 12,000, with deaths exceeding those from breast cancer.

The European Association of Urology have now published a position paper in the journal European Urology which represents the conclusions of probably the most expert, unbiased body so far to report on Prostate Cancer Screening which comes out clearly in favour.

Read the full story here.

Tackle Trustee Roshani Perera turns the spotlight on mental health in cancer care

Tackle Trustee Roshani Perera, director of the Wicked Minds healthcare consultancy, has written an article that has been published in PharmaTimes. The article looks at the provision of psychological support services for men living with prostate cancer and their carers and families across England based on a Tackle Freedom of Information request.

Click here to read the article in full...

European Experts Advocate Population-based Screening

Tackle wholeheartedly welcomes the news that the European Association of Urology, probably the most informed and expert major international body to make a judgement, has published a clear and unequivocal recommendation in favour of population-based Prostate Specific Antigen (PSA) screening to reduce the unacceptable death rate from Prostate Cancer (PCa).

In a lengthy paper published in the journal European Urology (Eur Urol, 2019; 76: 142-150), the 12 member expert panel drawn from across Europe, including the UK, has assessed all the key evidence accrued over 30 years of PSA use for PCa screening.

In summary, the greatest benefit derives from early detection of aggressive PCa at a curable stage which comes from having a baseline PSA at age 45 to individualise a man’s future risk of developing PCa.  This should be linked to the other standard risk factors of ethnicity and a   family history of prostate cancer or breast cancer to determine the subsequent follow-up interval:  one yearly PSA for men at high risk, extending out to 8 yearly for men at lowest risk.

MRI scans and new biomarkers should be used to determine which men with a raised PSA require a prostate biopsy and, crucially, to avoid unnecessary biopsies. Men subsequently diagnosed with non-aggressive, localised PCa can be safely managed by active surveillance thus avoiding unnecessary overtreatment.

Having weighed up the pros and cons, the panel concluded that the weight of evidence now shows a clear balance in favour of screening and thus fully supports the introduction population-based  PCa screening programmes.

Tackle Makes Submission to UK National Screening Committee

In partnership with CHAPS and ORCHID, Tackle has submitted our views on prostate cancer screening to the UK National Screening Committee (NSC).

In their last review in 2015/16, the NSC did not recommend screening for the following reasons:

Evidence suggests prostate specific antigen (PSA) testing could reduce prostate-cancer related mortality by 21%. Despite this, the major harms of treating men who incorrectly test positive still outweigh the benefits.

The PSA test is a poor test for prostate cancer and a more specific and sensitive test is needed. The PSA test is unable to distinguish between slow-growing and fast-growing cancers.

Current evidence does not support a population screening programme using any other test.

valuation is currently taking place which could have the potential to improve the accuracy of PSA testing to identify men at greater risk of fast-growing prostate cancers.

The NSC is due to review prostate cancer screening again this year. As part of our campaign for earlier diagnosis, Tackle has long supported national screening for prostate cancer, particularly for men at higher risk and the evidence supports its introduction. So, we wanted to make our views known to the NSC..

We are extremely grateful to Chris Booth, a member of our Clinical Advisory Board, who has put together the submission on our behalf, the conclusion of which is:

The UK’s current annual death rate of 12,000 men – that’s one death every 45 minutes – is unacceptable and the argument that the harms of screening outweigh the benefits is no longer valid.

Despite awareness campaigns raising the profile of prostate cancer, the low rate of PSA testing in the UK has resulted in little opportunity to use the tools we already have for early detection, discrimination between aggressive and non-aggressive cancer and the cheaper option of early, curative treatment compared with late, expensive, palliation of advanced prostate cancer.  Adoption now of proven, best practice use of PSA on a national scale could halve the UK death rate.  However, Primary Care does not have the capability to manage such a programme.

In the light of this evidence, the status quo discriminates against men, is financially unsound and medically unsustainable.  We therefore recommend a fundamental change in the utilisation and delivery of PSA screening commencing with men at high risk as the first steps in establishing an adequate, national approach to reducing the UK’s unacceptable death rate from this most pernicious cancer.

Read our submission in full here. We will keep you posted on developments.

Scottish Medicines Commission approves an extended use for Abiraterone

The Scottish Medicines Commission have recently approved the use of Abiraterone earlier in the treatment pathway for prostate cancer.

This approval is specifically for patients with newly diagnosed, high risk, metastatic, hormone sensitive prostatic cancer.  Or to put it more simply, patients who have just been diagnosed with significant advanced disease who would normally just be treated with hormone therapy (Androgen Deprivation Therapy / ADT) as a single treatment agent.

It has become apparent through a number of trials such as STAMPEDE and LATITUDE that better treatment outcomes, reduced progression of disease and increased length of survival can be achieved by no longer relying on mono-therapy with ADT but with combined therapy with ADT and a second drug.

The treatment pathway currently used is a combination of ADT and chemotherapy i.e. Docetaxel.  Docetaxel is not specifically licensed for this use, but by common consent is considered suitable for use in this way.  The studies showed that equally good or better results can be gained by using Abiraterone instead of Docetaxel.  There are a number of medical / clinical reasons why patients may be better treated with Abiraterone rather than Docetaxel.  This approval by the SMC now adds another alternative to the treatment pathway and quite rightly gives patients the possibility of treatment choice.  Tackle strongly believes that patient choice is an important part of the decision process for treatment.

This is a major step forward in the treatment that can now be offered to men in Scotland who have advanced disease at the time of initial diagnosis.  The SMC are to be applauded for making this decision.

Currently an identical appraisal process is going through NICE – the English body equivalent to the SMC.  This decision process is lengthy and has yet to reach a final conclusion.  The decisions made by the SMC are not automatically mirrored by NICE.  There is no guarantee that the same treatment pathway will be made available to men in England.  If approval is not gained from NICE, then there will obviously be a serious discrepancy in treatments available to men within the UK.

Tackle will keep a close involvement and will update members as soon as there is further information available.

Tackle awarded funding by the National Lottery

Tackle Prostate Cancer, the voice of prostate cancer patients and their families in the UK have been awarded funding by the National Lottery for the project Tackling Prostate Cancer – peer-to-peer support for men with prostate cancer. The grant is for just under £238,000 over three years.

There are three main aims for this project:

  • to increase the number of patient-led cancer support groups, particularly in areas where there is currently a lack of provision;
  • to support and encourage existing groups and increase membership by at least 10%; and
  • to ensure that we are reaching out to all members of the community whatever their background

Tackle Prostate Cancer is a patient-led charity addressing the real issues people face when they are diagnosed with prostate cancer and helping people to cope with their diagnosis and treatment. As a National Federation, Tackle has 90 support groups across the country, representing some 15,000 members. Many groups contributed to an online survey last year. The answers to which provided much of the background for the lottery application and helped towards its success.

Ken Mastris Chairman of Tackle Prostate Cancer said: “This is a really excellent start to 2020! It’s a great opportunity to help more men – and their families – feel less isolated, better supported and more empowered to navigate their cancer journey. It's a big project and we would like your support implementing it. We're very grateful to all those who helped us with the survey last year but particularly to former Chairman Roger Wotton who instigated and managed the project. This will be a lasting legacy to him.”

Prostate cancer is now a bigger killer than breast cancer, making prostate cancer the third biggest cancer killer in the UK. Every penny raised will make a difference, lives will be saved and more people will be aware of the need to be tested.

Along with the lottery funding Tackle will also be continuing to meet its objectives of campaigning on behalf of patients and raising awareness in the community. It will also enable the ‘Save a Dad’ initiative to be followed through in secondary schools where the aim is to get a discussion on prostate cancer in the National Curriculum, just as breast cancer is included today. Working through secondary schools Tackle would like to make teenagers aware that prostate cancer will impact 1 in 8 of their dads. The charity hopes that by educating the next generation about the importance of men being tested earlier it can help “Save a Dad”.


Evaluating psychological support services available on the NHS

We are very pleased to announce that the results of our Freedom of Information request to all NHS Trusts in England and Wales have been published in BJUI International. 

The background to this paper starts with Roger Wotton who believed strongly that the emotional and psychological aspects of prostate cancer can sometimes be more debilitating than the physical manifestations of the disease and we wanted to find out what support is available on the NHS.

As the article says, "it is concerning that NHS commissioned services, where they exist, seem to be under pressure and 28% of hospital Trusts have no NHS commissioned psychological support services ... and therefore rely on psychological services offered by national and local charitable organisations". This underlines just how important prostate cancer support groups are in providing emotional and psychological support to men with prostate cancer and their families.

Now that we have had the results published, we will look to see if we can build on this to help improve support for men and their families who might be suffering.

Read the article in BJUI International here. We are extremely grateful to Trustee Frank Chinegwundoh and Roshani Perera of Wicked Minds who prepared the paper.


Prostate Cancer Screening News

The MRI Scanning trial at UCLH highlighted in the national news brings hope of increased and improved prostate cancer screening for the UK’s number one male cancer causing 47,000 new cases and nearly 12,000 deaths each year.

MRI scanning is now the best way to see if there is an aggressive, dangerous cancer inside the prostate gland but the first step to find out is to have a PSA blood test.

The NHS “Prostate Cancer Risk Management Programme” entitles all men over 50  and men with a family history of prostate cancer or black men of African or Caribbean heritage over age 45 to have a PSA test.

If the PSA test is persistently abnormal and there is no simple explanation, the next step is an MRI scan. If the scan is normal, the risk of an underlying dangerous cancer is extremely low so there is no need to go on to have invasive prostate biopsies and  many men are now spared this potentially dangerous test. If the scan does show up an abnormality, biopsies can now  be targeted  with much greater accuracy.

Remember, the first step is a PSA test so check it now – don’t wait for symptoms to arise.

Get a Score on the Board. You'd be nuts not to!

New Guide for Sons and Daughters

Survey results released today have revealed that more than half of sons, daughters or fathers with prostate cancer, avoid talking about his diagnosis.1 Despite this, almost one in two sons and daughters surveyed admitted to having questions they wanted to ask their father, 1 and three out of five wish they felt more confident in starting a conversation with their father about his prostate cancer.1

The results come from a national survey carried out as part of the Manversation prostate cancer awareness campaign, and questioned 200 sons and daughters whose father is currently living with a prostate cancer diagnosis.

In response to the survey, a discussion guide has been developed to help sons and daughters have better conversations with their father about his prostate cancer. These conversations are vitally important, as noticing small changes in men with prostate cancer can make a big difference to their long-term survival, as it could mean the cancer is progressing to a more advanced stage.2,3,4

The guide, available at draws on the experiences of sons and daughters whose father has prostate cancer, to provide practical advice and guidance on how to start these conversations. The guide also contains easy to understand medical information about prostate cancer and the treatments available to enable more informed conversations, as the survey highlighted a distinct lack of knowledge about the symptoms of advanced prostate cancer.1 The discussion guide was produced for the Manversation prostate awareness campaign, which is supported by Tackle Prostate Cancer and Orchid Fighting Male Cancer, and is organised and funded by Bayer.

Ken Mastris, Tackle Chairman, said: “Prostate cancer affects the entire family and it can be frightening for everyone involved. But good communication can help support families in tackling it together.”

The study also revealed 57% of sons and daughters worry about their fathers’ condition several times a week.1 However, many avoid the topic due to worrying their father will become upset, embarrassed or angry by the conversation.1

Ken says there is an unmet need for supporting young people and adults whose father has prostate cancer, sometimes years after the diagnosis. He added: “Some fathers may not be aware of the impact that their condition has on their children’s lives, particularly the psychological and emotional aspects. Family life may feel strained and when children are unable to talk openly to their father it can lead to feelings of stress, sadness and frustration” Ken said.

Findings from the Manversation survey revealed that: 1

  • Over half (54%) of sons and daughters say that the topic of prostate cancer is one that is avoided by either them, their father or both of them
  • More than three fifths (61%) of sons and daughters wish they felt more confident in starting a conversation with their father about his prostate cancer.
  • Almost one in three (31%) have never tried to start a conversation with their father about his prostate cancer
  • Worrying that they will upset their father and make things harder for him is the main barrier to having a conversation, followed by feeling awkward, a lack of confidence in talking about the topic and feeling anxious
  • One in three (33%) do not feel satisfied with the conversations they have with their father about his prostate cancer
  • Almost half (48%) have questions they would like to discuss with their father about his prostate cancer but don’t currently feel able to do so

Prostate cancer is the most common cancer in men in the UK, affecting one in eight men over their lifetime,5 and one in four black men.6 While most prostate cancers grow slowly or not at all, in some cases it can spread to other parts of the body and become advanced.5

The survey showed that over three quarters (84%) of sons and daughters say they feel confident in recognising the signs and symptoms of advanced prostate cancer.1 However, just 1% (2 people) recognised all of the correct signs and symptoms of advanced prostate cancer (from the list that was shown in the online survey).1

Simon Greenstreet, Head of Communications, Bayer, says it is important that families are educated on advanced prostate cancer symptoms so they know the signs to look out for, and are able to act quickly.

“Family and close friends are often well-placed to help spot changes in a loved one's symptoms. It is important to address conversation barriers so that they can support and encourage their father to visit their doctor as soon as they experience any potential symptoms” Simon said.

“We hope that by providing real-world insight-based support and practical advice, we can help motivate and equip men and their families with the tools to have these difficult conversations,” Simon added.


  1. Market research with 200 sons and daughters, aged 18-45 years old, of a father currently living with prostate cancer, conducted by 3GEM Research and Insights in May 2019 on behalf of Pegasus and Bayer.
  2. Prostate Cancer UK. Advanced prostate cancer: Managing symptoms. Available at: [Last accessed October 2019]
  3. NHS. Treatment Prostate cancer. Available at:[Last accessed October 2019]
  4. Prostate Cancer UK. What are the symptoms of prostate cancer? Available at: [Last accessed October 2019]
  5. Prostate Cancer UK. Prostate cancer - A guide for men who’ve just been diagnosed. Available at: [Last accessed October 2019]
  6. Prostate Cancer UK. Are you at risk? Available at: [Last accessed October 2019]


Sad News

It is with the deepest regret and sadness that we announce the death of our friend Roger Wotton on Friday last week after a courageous fight against Prostate Cancer.
Roger was tireless in his commitment to the cause of prostate cancer awareness. He was a passionate advocate of the importance of the view of prostate cancer patients being heard and a strong campaigner for early diagnosis of prostate cancer. A full tribute will be published in the next edition of Prostate Matters.

We have lost a dear friend and we need to continue the fight for men against prostate cancer in memory of Roger. 

Our thoughts and prayers are with his wife Susan and his family at this sad time.

Tackle contributes to One Cancer Voice: a manifesto for people living with cancer

Tackle has joined other cancer charities including Cancer Research UK and Macmillan to publish a manifesto for people living with cancer. The key points are:

  1. Put the right staff in place
  2. Diagnose cancer earlier
  3. Ensure people living with cancer have access to the appropriate treatment and pscychological support
  4. Support people living with cancer beyond their treatment
  5. Preserve the UK's status as a world-leader in cancer research
  6. Prevent people from developing cancer

Read the Once Cancer Voice manifesto here

Prostate Cancer Screening - Update

As a Charity campaigning for better awareness and access to PSA screening for Prostate Cancer (PCa), we flag up significant advances in our fight against our commonest male cancer killing nearly 12,000 UK men every year, a figure now exceeding deaths from breast cancer. We therefore track reports from scientific journals and international conferences. The “take home” messages so far this year from Europe and the UK are:

• There are NO new markers available to replace PSA as the initial screening tool for PCa.
• “Risk Calculators” can be used to determine risk and optimum frequency of PSA testing for men over 40 ref 1
• The key risk factors are: the initial PSA level* ref 2,3, advancing age, a family history of prostate cancer or breast cancer and black ethnicity, including men of mixed African or Caribbean descent. Most GPs are not familiar with these risk factors ref 4.
• DO NOT stop screening at age 70 ref 5.
• Men in PSA screening programmes run for up to 20 years are now consistently benefiting from 50% reductions in the PCa death rate compared with men who are not being screened ref 6,7. Consequently the European Urological Association has now recommended to the European Parliament that national PSA-based screening programmes be introduced ref 8.
• A raised PSA must be followed by second line tests BEFORE undergoing a prostate biopsy. In the UK mp-MRI is the recommended test ref 9 but numerous blood and urine tests are competing for recognition.
• mp-MRI scanning is greatly reducing the so-called “over-diagnosis” of non-aggressive, insignificant PCa in the UK ref 10.
• NO tests are 100% reliable yet in detecting PCa or differentiating between aggressive cancers that need treatment and non-aggressive, insignificant cancers that do not need treatment, but the “over-treatment” rate for non-aggressive, insignificant PCa in the UK has now fallen to only 4% ref 11.
• “Active Surveillance” is a safe treatment option for apparent non-aggressive PCa ref 12.
• Minimally invasive treatments for early, localised PCa continue to demonstrate reduced side effects and good cancer control/cure.

* For men age 40-60, a “normal” initial PSA of 1-2ng/ml carries a 26% risk of later PCa; an initial PSA of 2-3ng/ml carries a 40% risk of later PCa. Such men require 1-2 yearly screening.

In conclusion, the evidence now clearly shows that if a man wishes to reduce his chance of dying from PCa, he should start PSA screening no later than age 50. All men over 50 in the UK are entitled to have a PSA test on the NHS, after appropriate counselling, which can be arranged via your GP. This is a current NHS entitlement ref 13.


1. Prostate Cancer Research Foundation, Reeuwijk. In partnership with the European Randomised Study of Screening for Prostate Cancer; accessed 4/10/19.

2. Scand J Urol. 2018. Sep 21: 1-7.

3. Eur Urol. 2013. 64(3): 347-54

4. 2019. Prostate Cancer: Survey of GPs. Censuswide; accessed 21/10/19.

5. BJU Int. 2014; 113: 186-88.

6. Eur Urol. 2015; 65: 329-36.

7. Urology. 2018; 118: 119-26.

8. Policy Paper on PSA Screening for Prostate Cancer. European Association of Urology.
January 2019.

9. 131/chapter/Recommendations # assessment-and-diagnosis. May 2019; Accessed 21/10/19.

10. Lancet 2017; 389: 815-22.

11. National Prostate Cancer Audit; Annual Report 2019, HQIP.

12. N Eng J Med 2016; 375: 1415-24.

13. Public Health England. Accessed 21/10/19.

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